This week, my aunt phoned me and told me about a young couple whose baby is in ICU with bleeding on the brain. She could not tell me all the details, so I have to make some assumptions. I assume that the little girl is a newborn. According to my aunt the couple now have to make the decision to take her off machines. I’m not sure what the machines are. I’m also assuming that she has some brain function and is not technically brain-dead. According to the doctors the chances are that she won’t survive and that she would be deaf and blind and not respond to anyone if she does survive. She would also be “in pain” all the time. The couple have asked for a week’s grace to be able to make a decision. The words used bring back strong memories and they are not pleasant.
We have also initially been told that Loren might not survive if we take him off the ventilator. He did. Furthermore we were told that if he did not cope without ventilation the doctors would be reluctant (the word refuse was actually used) to ventilate him again. We were coerced into making a statement that we did not want him to be ventilated in such a case. Knowing what I do now, I would have flatly refused to sign such a statement. I think it is cowardly to advise a parent to refuse ventilation and make the parent assume legal responsibility for it. We’ve been told that he would likely be deaf and blind. He was not. We were told he might not react to us. He did. Brain injury in itself does not guarantee pain. Spasticity or digestive problems or problems with shunts can cause pain. Some degree of pain – even in babies without problems – is unavoidable. But there are ways and means to deal with it.
Brain injury is still not very well understood. Not by the man in the street and certainly not by doctors. And words like “constant pain” is an underhanded way of scaring parents into doing what doctors or the ignorant (and sometimes, unfortunately they are one and the same) would like them to do. Which is to kill a child they – the doctors – cannot “fix”.
First of all, I know from bitter experience that most (not all) doctors look at a case like this from of a Humanistic point of view. They believe that all suffering is bad and that death is preferable to severe disability. They also believe that it is better for siblings and parents not to have to deal with a severely disabled child. In the past, disabled people were put in institutions for this reason. .
I disagree. Nobody can decide about anybody else’s quality of life and whether his/her life is worth living. We can tell others from experience that having a child with a severe disability is life-changing and not always easy, but it is worth every moment you get to spend with that child. Siblings hopefully learn never to judge a book by its cover. It is also not easy on them, but as long as there’s enough love there is a strong chance that they will emerge as stronger more loving people in the long run. I think that disabled people have a lot to offer and that the world should sit up and take notice. And as long as people who are generally revered and respected like doctors tell parents it is kinder to let their disabled children or their children with chromosomal deviations from normal die, this is not going to happen.
“Fixing” the disability is of course a contentious issue. Of course if I had a choice I would have preferred Loren to have had no problems. In his case not being able to swallow was a life-threatening situation. We had to try and minimise its effects as far as possible to help keep him alive. (I have to stress that Loren had had ample opportunity to die, if he chose to. This blog is testimony to Loren surviving many crises when he had medically speaking no chance. He somehow seemed to choose life every time until one fateful night in April. )
The conventional medical world seems to look at CP from a particular point of view. (I’m deliberately not using the words “wrong” or “right”.) I am grateful for ABR and other therapies for making us aware of the existence of a different point of view which creates a far more positive frame of mind. I’m also grateful for getting to know other people and other parents who deal with disabilities every day.
No-one claims that CP can be fixed. But so what if it cannot? Only a fool would suggest the world is a perfect place where two perfect parents live in a house in the suburbs with their two perfect kids and never have to deal with illness or imperfection.
In the end it all boils down to choices. And like usual, I’m advocating for not being forced into a choice based on just one point of view. I’m advocating for not being advised by people who have not walked in these shoes. When talk is cheap, don’t buy it.
